There was a snow advisory last night and I spent about five minutes or so outside to pick Miyu up from her grandparents (they live about a 2-3 minute walk away from us, I met them halfway). When I came back inside, my hands looked like this:
As part of my mixed connective tissue disease, I also have something called Raynaud’s Syndrome. Basically, I lose circulation in my fingers and sometimes my toes when I’m exposed to cold temperatures. It’s like that feeling when your leg or foot falls asleep. It’s an aching numbness and it takes a while to go away. For me, my hand warmer really helps with this.
On Monday, January 18, we went to see my rheumatologist who prescribed me Plaquenil (200mg). I’m supposed to alternate the dosage—2 pills one day, 1 pill the next day, repeat. One month supply costs ¥19,380 or roughly $200. Yikes. At my next appointment I will need to verify with my rheumatologist whether he can prescribe me the generic version (Hydroxychloroquine). If not, my American doctor will provide me a prescription so that I can purchase a mail-order for the generic brand from an online pharmacy in the U.S.
So… I started with two pills on Tuesday, January 19. What I did notice on Day 2 (Wednesday) was that in the morning, I felt a little bit better. It’s hard to tell though because the barometric pressure was also 1017 hPA for the second day in a row, so that may have attributed to an improvement on pain levels. Since about mid-December, my entire left leg and hips have been hurting, making it hard for me to walk and stand up from a seated position. Sometimes I’m laying in bed trying to get comfortable and my left knee pops as I’m straightening it out and it’s so painful and sudden that I actually cry/curse out loud. Also, my right middle finger has been stiff and swollen for over a month, and my upper right back makes it so that it’s painful for me to raise or fully extend my right arm.
Dr. Matsueda said it can take two to four weeks for me to start seeing results. He had warned me that if I get a rash in the first 1-2 days, I should immediately stop the medication. Also, if I am having any trouble with my vision, I should immediately stop.
That morning when I first took Plaquenil, I had just finished eating my breakfast and Miyu was getting dressed for school. I asked her to pray that this medicine will make me better. I was a bit surprised when she took my request quite literally because a few moments later, she was kneeling in front of our shrine arrow. If I remember correctly, I think she prayed first in English and then in Japanese, LOL. My daughter is so kind and sweet, and I am ever grateful. 🥰
A few other things I’ve learned recently are:
I have the worst reaction (severe pain for days) when I ingest anything containing dairy and any milk derivatives
I can tolerate a few slices of bread per week with very mild pain
I can drink my favorite hot white chocolate mocha with almond milk and no whip cream from Starbucks without any adverse reaction (I might ache in my fingers and wrists for a few hours from the sugar but it goes away after about a day)
My energy levels drop significantly in the evening, which incites pain
I get headaches before my period and I’ve found that drinking one or two cups of coffee really helps, probably due to the higher caffeine content. I drink pure (Japanese) green tea regularly, which has caffeine in it, but I guess it’s not enough to prevent/deal with my monthly headaches.
Some things I’ve started to implement in order to help manage my pain better:
Take regular Epsom salt baths. The first time I think the water was too hot and when I got out, I was really dizzy and lightheaded. Otherwise, I’ve found them to be relaxing and it does help a little bit. I can only stand to be in there for 20 minutes at a time though. For some reason I get anxiety if I stay too long. Like I’m being lazy or too indulgent. Plus, my fingers get pruny, it becomes stifling in the shower room, and I have to constantly rewet my face. The latter is what prevents me from enjoying my Kindle Oasis in the bath tub. Maybe I’m just not really one of those luxuriant bath-taker types? LOL
I bought a hand warmer which works so well whenever my fingers turn cold. Sometimes I’m just at my desk as I’m doing now and out of nowhere, a few of my fingers will start to feel ice cold and numb. It’s as if I had stuck them in the freezer for a few minutes. Really bizarre.
Drinking tea with and in between meals (rotating between: Green, Burdock, Ginger, Chamomile, Mugwort, and Artemisia Annua)
I take naps whenever I can
Apparently pulmonary hypertension is a big cause of death for MCTD patients, and I can totally see why. Sometimes I’m just walking around the house doing chores and I notice my chest starting to ache and my heart beating fast—almost painfully. For those moments, I make sure to sit down and rest. Sigh. I think I’m finally getting to that point where I’m accepting my body’s limitations and making peace with that. I’m thankful that I’ve now started my medication, at least, and am finally on the road to recovery. The path may not be an easy one, but it’s a path nevertheless and as always, I’m looking ever forward.
It all started in the summer of 2017, nearly two years after my one and only manic episode, the diagnosis of Bipolar Type I, and the subsequent prescription for Lithium Carbonate 900mg. I believe during this time, my weight was at its highest at around 150-160 pounds. I had been out posting flyers (for my job) and started noticing that my thumb hurt pretty badly whenever I used it to push pushpins into a corkboard. I didn’t think too deeply about this and brushed it off. That winter, I remember I began feeling the pins and needles sensation in both of my hands. Again, I just brushed it off, thinking it was maybe because we slept on futons at that time and I had poor circulation.
Fast forward to winter 2018, I started noticing more symptoms. My hands would be stiff and achey in the mornings and at night, but most notably in the mornings. I finally decided to visit the clinic on base and they told me that there was something abnormal about my blood report so they referred me to an off base hospital. I went and they took a copious amount of blood, and x-rayed my hands and feet. But everything came back normal. So again, I brushed it off. Plus, my mom has arthritis. Maybe I was getting it too, you know?
Yesterday, Ken and I went to the hospital to provide another blood sample required by my rheumatologist. I was supposed to drive there but my fingers, especially on my right hand, were still terribly inflamed so Ken drove instead. With moderate traffic, it’s only about a 15-20 minute drive from our apartment. Once we got there, it was a rather smooth process, I must say. I think it was because Ken was there. So when we went in, I put my hospital card in the machine so that I could get my itinerary. Then, following this itinerary, I had to visit a customer service window to confirm that I did not have Japanese health insurance. Then, I went to the second floor where blood and urine samples are collected. Went to the counter there, was asked to put my hospital card in another machine that dispensed my ticket number. We waited for a few minutes, then I provided three or four vials of blood. Afterward, we went back down to the first floor, waited in line again at the window so they could process my bill. Finally, I went to one of the payment machines, put my hospital card in, paid for my bill using my credit card, then I received my invoice, receipt, and future appointment ticket for December 21. There were people behind us in line so I was too anxious to take a photo of this process, ugh. As we left the hospital, I encouraged Ken to get Starbucks (located in the hospital!) but he felt bad that I couldn’t drink my favorite white mocha, so he ended up not getting anything. I had mentioned to him that it was okay, that I would just drink vicariously through him, but he wouldn’t have it.
After getting poor sleep Sunday night, I promised myself that I would go to bed early yesterday. Fell asleep pretty fast and when I woke up, I didn’t feel too groggy. Pain level was slightly improved, but my left toes are still swollen, still can’t fully utilize my right elbow, and both wrists feel crabby.
I know this app isn’t entirely accurate, but for the most part, I’m just glad to know that I got a full 7-8 hours of sleep. And side note, it seems to record Ken’s snoring, not mine (I have the audio recording to prove it!). Anyway, it’s extremely rare for me to get 100% sleep quality on a weeknight, much less on a Monday. But I hope to make this my new normal.